Tag: chemotherapy

Breast cancer lesson 138: The ten things no chemo patient should be without

On By Jackie ScullyIn Chemotherapy2 Comments

When diagnosis day came along and put a spanner in my plans for the new year, I made an extra resolution. And, it’s one I’d like to think I’ve kept. As soon as I walked out of that consulting room (well, maybe a bit later after I’d had a good cry), I decided that if I was going to go through the pain of active treatment, I would use it as a way to help others. From the beginning, I haven’t been in search of pity or sympathy (although I have learned that if you hug for about six seconds first thing it can change the course of a day). I have been in search of tips to brighten my journey – and the journeys of those who face cancer treatment in the future.

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I love a good kit list (reminds me of preparing for camp as a child), so it has been a real joy to work on one over the last few months. I have poured over charity booklets (Breast Cancer Care and Macmillan being the most comprehensive), I have quizzed patients wearing lovely hats in hospital waiting rooms, I have Googled until my hands ache for products and solutions to help make life that little bit easier. I am a lot happier for it and I hope, by writing about it here, you (or someone you love) will be a lot happier too.

On the menu bar of my blog, you’ll find a new section called Cancer Kit List (click here to view). I have started with chemo and will be adding surgery as soon as I’ve typed up my notes. Of course, don’t have much radiotherapy wisdom yet, because it needs to happen first!

The emphasis here is on products rather than general tips (I am already working on those for later in the year). It’s personal and is in no way backed by companies or medical advisors. But, it’s my little way of shining a light on what can be a very dark time.

If I were to pick out just 10 things from the list (putting all medicines and prescription mouthwashes to one side) to create the ultimate chemo survivor’s guide, I’d select:

  1. Digital thermometer: This handbag essential will ensure you don’t have to camp out at A&E to find out the difference between a temperature and a hot flush!
  2. Dark nail varnish: Ok, so work colleagues and friends may think you have gone all goth on them (or arty in my case). But, by painting your nails, you can both strengthen them and disguise any discolouration and chemo lines! The choice of colours is endless. You could even use them to match your mood. Who said cancer treatment couldn’t be fun?!
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  3. Extra strong mints: These little mints can reach tastebuds you thought were gone forever. I am still finding packets all over the house after stocking up mid chemo!
  4. Smoothie ice lollies: Making ice lollies in a kit from my childhood was fun in a nostalgic sort of way, but eating frozen smoothie lollies was about as exciting for me as ham on Christmas morning (and that is about as exciting as food gets for me)!
  5. A yoga bamboo turban: Whether you’re wedded to your wig or fancy tying complicated knots in your headscarves, I am a firm believer that we all need one easy-to-put-on-and-actually-rather-lovely hat. The yoga bamboo turban (made by Christine headwear) comes in so many colours and is so versatile (sport, relaxing at home, parties, work etc), you’ll wonder how you ever lived without one!
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  6. Tissues: Ignore a lack of nose hair at your peril. And eyelashes for that matter. Also doubles up as toilet paper when you’re out and about, which is most useful!
  7. Children’s toothbrush: It’s a fact that children’s toothbrushes are far more exciting and colourful than adult equivalents. They are also, however, soft enough to look after your sensitive gums during chemo. Adult ones feel like you are brushing with a twig covered in spikes!
  8. Ribena: Ok, so you may not be a fan of the red stuff (especially after Epirubicin), but now is the time to discover just what water flavourings you do like! When the tastebuds disappear, water (which is essential for flushing the system) will be anything but appetising.
  9. LIMBO: Try showering without this waterproof arm protector when you’ve got a PICC line in and you’ll soon realise that attempting to keep one arm dry is neither fun nor practical.
  10. Lightweight scarf: With temperature changes, hot flushes and skin sensitivity on chemo, you could be forgiven for thinking you need a suitcase of clothes just to go for a walk. Big summer scarves (and there are some lovely ones out there) will be your jumper, your neck protector, your sunscreen, your windbreak and your style statement. And, they fold up to virtually nothing when you just want the comfort of knowing it’s in your bag if you need it.
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Of course, there are many others (hence why I have started the cancer kit list), but these are the ones that continue to raise a smile, even though the chemo days are already starting to fade.

Every day, someone is called into a hospital consulting room and told they have cancer. Every day, someone will face a side effect of treatment for the first time and find a way to cope with it. By sharing tips and advice, it is my hope that every day in a cancer patient’s journey is one they are prepared to face.

Breast cancer lesson 129: Chemo may eat your eyebrows, but don’t let it steal your smile

On By Jackie ScullyIn Chemotherapy, Happiness1 Comment

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Chemo week one – by which I mean the first week in a three-weekly cycle usually reserved for grimacing, steroids and a general feeling of emptiness – has actually been unexpectedly lovely. I think this has a lot to do with the fact that it is my last ‘chemo week one’, meaning that every day I get one step further away from poison and one step closer to being able to taste something that doesn’t have the words ‘ice lolly’ in the description. But, I started out last Friday determined to enjoy even the darker days. And, that’s exactly what I’ve done.

I was told the last chemo would feel different. You’re not preparing your body for another round in the unit. The PICC line is out. There are no blood tests booked. The pill packets are emptying and don’t need replenishing. You’re doing things for the last time. Until you experience it, however, it’s hard to know whether that will be the case. After all, the dose is the same, the injections are still prickly and the medication still makes your cheeks puff up!

Seven days in and, touching all wood available, I am feeling good. Yes, I have pain. Yes, I have tingling hands and feet and cramps overnight. Yes, my tongue is a fluffy white colour, which makes me want to swig Difflam with every meal. Yes, the tastebuds have gone. Yes, the dizziness is here. And, yes, I still haven’t a clue what a good night sleep is. But, I feel good and that’s all that matters. I know low immunity week comes next and I also know things do have a habit of falling off (the final eyebrows and the nails being top of the list) when it’s all over. I am not out of the woods, but I can certainly see a clearing ahead!

Of course, I am putting a lot of this good feeling down to the fact the end is not just a distant dream, but a nice chunk of reality (8 August is the official chemo end date, which is now just two weeks away). But, I did also try a new tactic this time. I left London, and spent a few days at my family home. And, I have to say, it was truly magical.

Magical moments for me aren’t once-in-a-lifetime events. They are little moments that remind me just how lucky I am to be alive. It’s laughing with a friend after 14 years apart. It’s holding hands with a great aunt who nearly lost her life just two years ago. It’s sitting in the garden eating home-grown potatoes, carrots and beans. It’s lying on my parents’ bed watching TV. It’s a walk in the long grass on local parkland. This weekend taught me that I have my past to thank for the strength it has given me to move forward.

I have actually turned myself into a self-styled ‘student of happiness’ of late in an attempt to see whether there is a way I can ‘be happier’ when the business of life resumes. I was reading something only the other day about the importance of applying the airplane safety announcement ‘put your oxygen mask on first’ to daily life. Those who first look after themselves are best placed to look after others. While I hope never to see an oxygen mask again, I fully intend to make the most of the cancer’s thorough overhaul. Cancer hasn’t made me happy, but I know it has given me the time to reflect, focus on me and work out that I have been happy all along (I just didn’t always see it)!

If you have any reading recommendations to help me as I explore everything happiness has to offer, do shout.

Back in London now, I am still smiling (just a bit hotter). This has something to do with the sunshine and a lot to do with the ‘end-of-active-treatment’ date that is now penned in the diary. MONDAY 15 SEPTEMBER is less than two months away! I can almost touch it.

Whatever you are doing today, I hope you find time for a little happiness!

Breast cancer lesson number 104: Small steps can make a big difference

On By Jackie ScullyIn Charity, Chemotherapy, Happiness4 Comments

If you’d asked me at about 4am this morning, what I hoped would be my achievement of the day, I would have said getting out of bed. With muscle aches, bone pain, a sore throat, tingling in my toes and my feet and a continued sense of emptiness, I woke up today – or rather decided it was morning – thinking it might be just one of those days when it would be ok to lose myself in a good book and a packet of painkillers and try again tomorrow. Sat in the evening sunshine with a smile on my face, however, I couldn’t have been more wrong.

There are two reasons why I made it out of my pyjamas and decided to fight the fatigue. Firstly, I had a dentist appointment. Usually, just the thought of those blue gloves and shining implements would be enough to tempt me back under the covers. But, having looked after me so well before chemotherapy, I felt I really should make the effort (especially given the surgery is about two minutes from my front door). It was a rather nice experience in a way, although I confess this had less to do with the shiny tools and more to do with the fact the chair worked wonders for my pains, almost hugging my body as it tilted me closer to the dentist. You know it’s bad when you look to the dentist for a bit of comfort!

The second reason is a little closer to my heart. Today, I had a rather important message to deliver and I’d promised myself I would do my utmost to get out of my fluffy slippers and deliver it – pain or no pain. And, that’s exactly what I did.

So, at 1pm today, I wasn’t surrounded by cushions, but a group of business women on their lunch hour all waiting to hear what I had to say about boob checking and why ‘copping a feel’ might just save their lives.

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If you’ve been following my journey you’ll know that I took the decision early on not to count the days until the end of active treatment, but to make every day count (click here to read lesson 68 where I explain a bit more). Giving back for me isn’t just about raising money, dusting off my trainers and hitting the city streets (although that is still crucial and you can still sponsor me here). It’s about using every bit of my experience to make a difference. Today that meant putting on a Boobette jacket for the amazing charity CoppaFeel and striking up a healthy conversation about boobs. Today that meant encouraging people to make boob checking a part of their daily lives. Today that meant burying my pain in a pill packet and reinforcing the work of dedicated founder Kris Hallenga, who has a treatable, but incurable form of the disease.

As I stood in front of those women, I knew that even if they didn’t remember the slides, the number to text or the latest breast cancer statistics, they might just remember the woman who stood before them with a hot flush, a funny hat and a desire to make a difference. I thought my message might be that little bit more powerful if I was speaking with toxic drugs in my system. I think I was right.

So, ask me what my achievement of the day is now and I’ll probably overlook the getting out of bed part (although I’ll admit, it was key). Back in my fluffy slippers now, I can rest easy knowing I did my bit to stamp out the late detection of breast cancer and give young women the confidence to go to the doctor. 

I’d like to say that had earned me a lie-in, but I have pilates first thing! Here’s hoping the pain starts to ease soon! 

NB: By the way, if you’d like to find out more about CoppaFeel and even get a visit from a Boobette at your workplace or school, please do get in touch. I am on Boobette training at the weekend, so will be a fully-fledged volunteer come Saturday!

Breast cancer lesson 88: Happiness is knowing the halfway point is in sight

On By Jackie ScullyIn Chemotherapy, Happiness11 Comments

Ok, so I may be pushing it slightly by suggesting tomorrow marks the halfway point in my chemo treatment. But, even though I have another 12 weeks (out of 18) to go (making it just a third in terms of timings) tomorrow is the third poisoning out of six. That makes it pretty special.

Being the third chemo, it also means an end to FEC and, in particular Epirubicin. No longer will I have to watch the blood red liquid being syringed slowly into my veins. No longer with I have pink pee to remind me of the poison every time I go to the loo. After tomorrow’s session, I will say goodbye to the three-drug cocktail and hello to a new challenge (Docetaxel) for round 4. While it does require me getting used to a whole new set of side effects, I like the idea of a change.

How am I feeling about going back on the steroids, the anti-sickness medication and the chemo drugs? If I’m honest, a few days ago, I was a little worried.

Cycle one had a go at my hair and showed me just how nasty mouth ulcers can be. Apart from that, however, it left me alone and reassured me that I have the strength and the positivity to get through this. I went into cycle two with a smile on my face, confident the drugs were on my side. Little did I know as I sat in the chemo chair, just how much it would test me.

Don’t get me wrong. I am one of the lucky ones. But, with its tongue and mouth ulcers, vomit, nausea, headaches, tiredness, coughing, runny nose, hot flushes and sleepless nights, chemo is no walk in the park. I am going into tomorrow with an ulcerated tongue, the end of a cough and on the back of few too many nights of broken sleep. Physically, I have been challenged and, while my body is fighting back, it is not quite as fit as I’d like it to be.

Ask me how I am feeling now, however, and I would say, I am ready (if we ignore the false start I had this morning where I misplaced my travelcard and threw my iPod in the recycling bin by mistake on the way to today’s appointments). I know, whatever goodies it has up its sleeve (or in its syringe), I can and will get through them all. I am stronger than the drugs – and I know that while they have destruction on their minds currently, they will end up making me even more so.

Plus, I have a few new tricks. The evening poisoning for cycle two caught me off guard. I met my mum at the hospital. I hurried my lunch following a rather soggy encounter with a washing machine that decided not to spin my clothes, but instead wash my floor. I wasn’t on my game and I wasn’t focused on the right opposition (my floor needed a wash anyway). Now I am.

My mum is here the night before to help me avoid any unnecessary hurrying. I have grapes in the freezer (apparently sucking on them while having chemo can help the mouth). I am ready to drink my body weight in water. I will be making my first batch of chemo cookies tonight to ward off sickness and nausea. And, I will be requesting more anti-sickness medication at tomorrow’s session with the nurse. For every side effect I know of, I have a solution. And, for every one I don’t, I have my supportive and kind mum. Quite frankly, if I were the chemo drugs, I’d be scared!

Let’s just hope I pass the blood test first thing. Wish me luck!

Breast cancer lesson number 73: Cancer strips away the things we think define us and, in so doing, shows us who we really are

On By Jackie ScullyIn Chemotherapy, Happiness, Reflections on cancerLeave a comment

It seems rather appropriate that, while everyone is chomping on the last of their Easter chocolate, my head should start to resemble that of a spring chicken.

Since the number two head shave, the darkish brown (even the odd black) spiky strands have disappeared, only to be replaced by what I can only describe as a bit of blonde baby fluff and a lot of baldness. It’s not shiny, I now have less hair than all the babies I have met in the last few weeks (I just wish they could talk so we could share tips) and Duncan still insists I move seamlessly from the sleep cap to the day headwear, so he doesn’t have to experience the ‘ill look’ too often. For him, it makes my invisible illness visible. For me, it’s a sign the drugs are working.

With the quickest haircare routine ever, I am still finding the whole hairloss side of treatment quite liberating. So, I have decided it is perfect timing to share my no make-up selfie with the world. I appreciate I am about a month or so behind, but having already donated a good few pounds to breast cancer charities recently, I didn’t really feel the need to yank on my hair to speed up the process. This, for me, is the true face of cancer. It can’t be masked with make-up. It’s a face that suggests that I’m fighting, but that won’t ever give away quite how much. It’s a face that looks well, but, in truth, it’s not a face I ever thought I’d see (especially not in my early 30s).

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I am lucky in that I have never been defined by my looks. I am also lucky in many ways that cancer has chosen to give me a glimpse of a life without hair to show me just how little any of this image stuff really matters. I never thought I’d say this, but I am more comfortable in my own skin now that I can see a lot more of it.

Throughout my childhood, I was teased for having the wrong straw-like hair, the wrong complexion, the wrong waist and hip measurements and a raised birthmark on my neck that made people point and stare. I felt out of place in my gym kit, out of place in my leotard or swimming costume and without a real place in life. I used to envy all the girls with their beautifully braided hair, flat stomachs, fashionable clothes and string of admirers. I used to dream of waking up as someone people would want to be. Now, I couldn’t dream of being anyone else.

Strange as it may seem, cancer has made me take one long hard look in the mirror and come away smiling. Cancer strips away the things we think define us and, in so doing, shows us who we really are. Cancer hasn’t made me stronger or happier, but it has let me see just how strong and happy I really am.

I no longer search for beauty in a perfectly-styled hairdo or glossy lips. I look for beauty behind the eyes. Anyone can paint on a vision of happiness or hide away under a layer of foundation. But beautiful people can laugh and smile without seeking the reassurance of others or the support that comes with a brightly-coloured lipstick.

So maybe, just maybe, you might like to ditch the make-up on more than one occasion this year. You don’t have to post it on Facebook and you don’t have to donate money every time you leave the mascara at home. But, you might just surprise yourself and discover that your real beauty doesn’t come from a tube of tinted moisturiser. It’s been there all along waiting for you to stop covering it up.

Thank you cancer, for making me feel beautiful. And, I hope that by reading this, you might learn to love the skin you’re in – hairless or otherwise!

Breast cancer lesson number 54: Be yourself, not a science experiment

On By Jackie ScullyIn Chemotherapy3 Comments

If philosopher Francis Bacon had been forced to undergo a course of chemotherapy treatment in his lifetime, I believe he may never have penned the immortal words: ‘knowledge is power’.

Never one to shy away from polysyllabic medical terms and textbook-like content, I prepared for this five-month stretch of my treatment in the way I would a school exam. Chemotherapy is, however, one aspect of my treatment about which I wish I knew a little less.

The Breast Care Nurse was spot on when she handed me the mandatory chemotherapy booklets and compared the reading experience to that of a examining the leaflet that comes with a packet of paracetamol. The trouble is, if you present someone (on more than one occasion) with an eye-watering list of side effects, they will wake up every day after starting treatment, expecting something to have fallen off.

It’s four days after FEC round one, and I am delighted to report that nothing has fallen off. I’m still pretty much in tact. The pot of steroids is empty, the anti-sickness pills are back in their packets until round two and the only unusual turn of events is that my house looks cleaner than has done since we moved in. Who would have predicted that six syringes and a bag of toxic drugs would have given me the desire to clean not only the kitchen floor, but the bedrooms and the fireplace too?!

Why is it, then, that I still feel a bit like a science experiment, being examined in my very own Jackie-sized petri dish? Every morning in the shower, I tug at my hair to make sure it’s still there. I count the strands left behind on my hairbrush. I stare down the toilet analysing everything that passes. I take pride in commenting on the lightening of my pee. I diligently touch up my dark nail polish. If my eyes water as I eat dinner I blame it on the chemo. I think too hard about the importance of an itchy ear. And, my skin is so well moisturised, I’m surprised I don’t slide out of my clothes.

Far from making me unwell (yet), chemo has successfully managed to magnify my imperfections (imperfections I probably had before the drugs went in). I now feel the urge to discuss every bit of my body. But the truth is, apart from a mouth slowly filling with ulcers and the odd taste change, my bodily functions are not particularly exciting. To be honest, you probably have more noteworthy activity in your own toilet bowls. Even the dreaded constipation/diarrhoea dilemma (is it staying in or running out?) is a bit of an anti-climax. I’d find reporting on a cold more exciting.

I think mum and Duncan are still expecting fireworks. Part of me is still expecting fireworks. Admittedly, there are 17 weeks left in this drug-fuelled challenge. But, if the last few days are anything to go by, the only explosions we’ll be seeing this year are the ones in the sky on November 5.

So, my advice to anyone currently preparing for chemo is this: take the leaflets, read the leaflets and then forget the lot. Information is not your chemo buddy. Get a thermometer and some anti-bacterial hand gel and don’t worry about your skin flaking off. Enjoy every day and trust your body – not a list of symptoms – to tell you if it needs a bit more TLC. Life is way too short to waste time starring down the plughole. I found it so tedious, I ended up attacking it with some drain unblocker (oh, thank you steroids for this temporary cleaning high)! 

You wait. My hair will start falling out now… 

Breast cancer lesson number 48: Short-term pain, long-term gain

On By Jackie ScullyIn Chemotherapy6 Comments

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Meet PICC. He’s my new best friend for the next four months (sorry body corset, but you’re history as tummy is pretty much sorted). Otherwise known as a peripherally inserted central catheter, he’s my ticket to the pain-free (and finding-a-vein free) administration of chemo drugs and collection of bloods. He’s not much to look at, but he’s better than a needle (or eight) and that’s all that matters.

There’s nothing like getting 42cm of flexible tubing inserted into your arm to make you feel like a real patient. One more consent form and another plastic wristband down and I was lying on a bed staring at an ultrasound machine, a syringe full of local anaesthetic and a lot of wipes and tubes. The good news? I didn’t have to wear a gown!

It started well. The nurse found a vein with the ultrasound while I was quizzing the nearby student nurse about all the operations she’d observed. (She was quite forthcoming about the details, including the time she watched a surgeon connect blood vessels from a tummy to a chest as part of DIEP surgery. It was fascinating and certainly a strange distraction from the procedure). The local anaesthetic went in well and then the tubing started to enter my arm. I heard the word ‘kink’, then a pause, then a ‘could you bleep the other nurse?’ and a ‘I’m sorry it’s got to come out’. She had done so well and got so far, but when the pressure turned to pain (it’s not supposed to hurt) we both knew it was time to abort. Another vein thrown on the vein scrapheap!

Round two was a complete success. Vein located, anaesthetic in, and 45cm of tubing later and I was off for a chest x-ray. I say 45cm, because the x-ray (an interesting experience in its own right and another x-ray first ticked off the list) highlighted that the tubing was in about 3cm too far. So, I was back to the Cancer Day Unit to get it pulled out a little bit. The tip of the PICC line sits in the big vein just outside the heart, while at the other end, there is about 4cm sticking out of my arm. Don’t worry, for those of you concerned about whether it will come out, the line is held in place by something called a ‘statlock’ and a transparent breathable dressing. Golf and tennis are now on the ‘temporarily banned’ list (along with swimming due to chemo), but I should be able to use it as normal once the initial tenderness has subsided. For those of you who’ve been unlucky enough to see my golf swing, you’ll know this is no great loss. The Olympic Park swimming trip on my Brighter Life list, will just have to wait.

Tucked away neatly under a piece of tubing, it wasn’t until I reached for my cardigan that I stumbled across challenge number one. At the moment, bad arm is right arm, so bad arm goes in to the sleeve first. But what happens when you have two sensitive arms? Let’s just say, it was a pretty good comedy sketch and, after a quick wrestle, I managed the cardie. The coat is a challenge for another day!

One other thing I didn’t consider in this battle against bad veins was that, like all good cannula-like devices, it needs looking after. That means weekly dressing changes and line flushing. More nurses, but thankfully no more needles! That’s a price worth paying. 

Today I have learned a good few things. One, the Cancer Day Unit is lovely (more on that tomorrow). Two, my right arm is now straight enough to pass arm testing for the clinical trial. (It took six attempts and the nurse and I were laughing by the end, but we got there.) Three, PICC line insertion is an interesting procedure (as is a chest x-ray) and really isn’t that uncomfortable if you’re considering getting one. Four, details of the acute oncology assessment unit must now travel with me everywhere. And, five, my blog URL is (amusingly) blocked by the hospital WIFI (probably deemed as dubious, but given the amount of boobs currently on show in most hospitals, I find it so funny. Mine just includes the word). The hospital does do a good egg sandwich though, so I’ll let them off.

I’ve seen the unit. I’ve seen the chemo chair (looks quite comfy). I’ve seen the suite and I’ve got the line. There’s only one thing missing. Those cell-destroying drugs. Just two sleeps left.

First, I have to work out how to have a shower without getting the PICC wet and then I need to look at just how many more clothes are now off limits due to my new arm accessory. Just when I thought I was getting my wardrobe back.

Breast cancer lesson number 46: When you’ve got nothing to lose (except your hair), go for it!

On By Jackie ScullyIn Chemotherapy3 Comments

I have a challenge for you. If there’s anything in your life you’ve always wanted to do, then find the time and the space to do it – and soon. Put it off no longer. I’ve just been for the shortest haircut of my life and, I have to say, I feel totally liberated. I’ve always wondered what I’d look like with a pixie haircut, and now I know. And, you know what? I wish I’d done it years ago.

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Ok, so having a pixie cut fours days before chemo may not sound brave or overly outrageous. After all, it was always going to look better than bald. But, having had a rather chequered history with anything shorter than a graduated bob, taking it off before cancer gets its hands on it was still a big decision (people forgive the cancer, but I think they’re less forgiving about elective style changes). This is something I decided to do, not because I wanted to make a statement, but because I want to keep the strands falling into my sleep cap to a minimum.

The last time I had hair anywhere near this short I was eight. Let’s just say it was forgettable. The local newsagents kept referring to me as ‘boy’ and, on a school trip down a mine, the guide asked me – otherwise known as ‘the lad’ – to assist in a demonstration. Sadly, at the beginning of the 1990s taking (and developing) photographs of virtually anything was all the rage, so there is a little too much photographic evidence of my basin look. I thought I’d never go back. I am so glad I did.

As my last hair appointment for more than six months, it was pretty special. Delighted that I have at last let go of the trusty bob, my hairdresser was visibly excited at the prospect of taking even more off. Getting an ‘it really suits you’ from the guy who has been cutting your hair for years – not to mention a quick head massage and a cup of tea – and then watching as his colleague complemented him on his snipping skills, is not something that happens every day (or even once in a decade for me). It felt good.

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Hair, we’ve had a good 32 years. I did once think you were a bit rope-like in consistency, and longed for a plait that didn’t look like it could moor a boat. I’m not sure the obligatory perm in my teens was a good idea. Growing my hair to the point at which I could sit on it was a bit misguided. Thankfully, the basin fringe was just a phase. And, having a four-hour trim with a hairdressing apprentice while at university, only to discover I had just 2mm less hair and roots dyed-in (can’t blame the apprentice, it was free) was a low point. But now, I appreciate you more than ever. I like your strength. I like the fact you’re a little bit of me. And, I hope that whatever grows back will give me as much pleasure – or at worst amusement (it could be grey, it could be baby curls, it could be me all over again).

While I felt a slight sadness knowing that I couldn’t book another appointment, and that the next time I would be here would be to let my hairdresser shave it all off (once the clumps start falling), I also felt a real boost. I’d had the confidence to do something different. If you don’t change a thing, there’s nothing to see.

They say if you’re not living on the edge, you’re taking up too much room. I am ready to step out of my comfort zone – as long as I can bring a cushion when the edge occasionally becomes the sharp end!

This is one hairstyle that won’t be growing out. This one’s going to fall out. Wish me luck!

Breast cancer lesson number 43: Cure, Help, Empower, Me to Overcome = CHEMO

On By Jackie ScullyIn Chemotherapy5 Comments

With the embryos now packed away in the freezer, one pixie haircut and one PICC line insertion are all that stand between me and chemotherapy. Cycle number one is planned in for next Wednesday and, I must confess, I’m already trying to imagine the side effects. Up to now, apart from a bit of pain, a lot of needles and enough drugs to stock a pharmacy, I have felt well. A week today, whether I like it or not, that’s all about to change.

They say the fear of chemo is often worse than the act of going through it. All I can say is, let’s hope they’re right (and that it’s not the cancer equivalent of ‘childbirth is fine’ so we all go into it with blind optimism). I have a rather vivid imagination and it’s currently in overdrive. This is in no small way to do with the consent form – or should I say dossier of potentially debilitating side effects. Beware drugs that come with consent forms! After seven pages listing out all the life-changing conditions I might end up with, it began to hit me that this is no normal prescription drug. This might actually be a bit grim.

For those wanting to know a bit more, chemotherapy is a systemic treatment using anti-cancer drugs. Its aim is to go after cancer cells in the whole body (not just the breast) and interfere with their ability to divide and grow. I will be going through what’s called adjuvant chemotherapy. This means it’s an additional treatment to reduce the risk of breast cancer returning after it has been removed (in some cases people have chemo before surgery – known as neo-adjuvant chemo – to slow the growth or shrink a tumour).

So, what awaits me in the chemotherapy chair? I will be undertaking something called the FEC-T regimen. First, I will enjoy three three-week cycles of FEC (lucky me). This is a combination of the following drugs:

1)    Fluorouracil (or 5FU)
2)    Epirubicin (a nice red liquid)
3)    Cyclophosphamide

Then, once I have got used to the way my body reacts to the above drugs, I will  move on to T or Docetaxel (one brand name is Taxotere, hence the letter T). This takes longer to administer and stays in the body longer (it gets better and better). And, I mustn’t forget the supply of anti-sickness drugs and steroids you get thrown in to keep said chemo drugs company.

In truth, the drugs are just words. It’s the list of side effects that leaves an impression. Everyone is different and no one knows how they are going to react. I know I’m strong, I know I’m positive, I know I will work when I can – and my consultant seems to think I’ll be just fine.

Bearing in mind, you probably wouldn’t take a paracetamol if you gave the pill packet too much attention, factsheets and side effects booklets are to be regarded with some caution. I will probably get some side effects, but if I get a lot, I will be more than a little unlucky and will be trading in my body for a better model at the next available opportunity.

The potential effects are many and varied. Rather than plough back through the consent form, here is my edit of the highlights (or lowlights depending on how you look at it):

1)    I will lose my hair: it seems the cold cap that is available will merely delay the inevitable, so I am going to lose my hair in style! Pre-chemo pixie is planned for Saturday and then, by the end of April, it will probably have disappeared. I am not particularly worried about this, am enjoying shopping for hats and am waiting for an opportunity to stand on a cliff with my bald head. Quite fancy not having to shave the rest of my body for months on end and it will, as a friend said, be interesting to see the shape of my head. My only fear? It growing back grey. At 32!

2)    I will get constipation: I doubt I’ll be able to beat eight days after hip surgery (not sure I want to try) so it will be back on the Laxido I’m sure. Whoop! You can also go the other way (now that would be a change!).

3)    I may get an infection: if my white blood cell levels drop, I will be more susceptible to infection. I plan to avoid the Underground where possible and have been acquainted with my new best friend, Mr thermometer. Apparently, if my temperature goes above 38 degrees, I will need to get to the hospital… and fast!

4)    I may vomit: having only vomited a few times in my life, I hope my strong constitution stands me in good stead. I certainly won’t be eating my favourite foods around the sessions, just in case I see them again ­– and then never want to eat them again. I hear the anti-sickness drugs can be effective but they can cause constipation (see 2).

5)    I may get fatigue: it’s fairly common, and the cumulative effect of all the treatment may take its toll.I plan to walk as often as I can and, of course, not operate any machinery if I feel tired (maybe just a kettle, a TV, a computer and a mobile phone).

6)    My sense of taste could change: I must say, I am intrigued by this side effect. Some say things taste like metal (yum) and others say they become addicted to sweet things. I better make sure I don’t overdo the baking, just in case. Let’s hope I don’t get too many ulcers and sores (another joyous side effect), so I can actually eat something.

7)    Docetaxel can cause bone pain: If it’s anything like my original hip pain or nerve pain, I will be willing these cycles to end!

8)    My hands or feet might start to tingle: This would be another treat from the wonderful T and is known as peripheral neuropathy. I am quite fond of my hands.

9)    Chemo brain: Chemo, if you’re listening, please don’t take my memory. I love remembering birthdays and running through my to-dos in my head. Take my memory and you take a big chunk of me. That’s not part of the deal.

All that, and I haven’t got started on heart problems, fluid retention, sun sensitivity, allergic reactions, blood clots, infertility or nail changes (or the side effects of Zoladex, the drug already in my system).

The truth is, by putting it out here in post form I wish to now close the A-Z of scary chemo effects. I will smile as the red liquid approaches. I will smile at my chemo nurses. I will smile as I write my first post-chemo blog. I will keep smiling until one of these things makes me smile no more.

As of this moment, I plan to take control of chemo. In an attempt to go down smiling (or better, not go down at all), I am in the market for chemo tips (I will write a post compiling them all later this week). Thanks to some beautiful friends, I have sleep caps, an inflatable bath pillow, nail varnish and queasy drops ticked off the list. I have senna. I have a toweling robe with which to dry myself and am on a mission to find the tastiest ginger nut. If you have a tip you think may help me stay strong and positive, please get in touch. I am willing to try, experiment and do anything (within reason), if I end up with a big smile on my face.

I was going to call this blog post ‘Know your enemy’, but when I finished writing it, I realised it’s wrong to call chemo the enemy. Cancer is the enemy and chemo is one of good guys (even if it likes to knock you down a few times along the way).

Here’s my deal. I’ll give you my hair, but you’ll have to fight me for everything else.

Breast cancer lesson number 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

On By Jackie ScullyIn Breast reconstruction surgery, Fertility, Reflections on cancer1 Comment

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home.